Celebrating World Rare Disease Day

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World Rare Disease Day is annually held on the last day of February in order to bring awareness to the general public, policy makers, health professionals and anyone with an interest in rare diseases. For those affected by a rare disease, this is their day to share their story.

In honor of World Rare Disease Day, we here at UCP-OC would like to share Jayden’s story with you. Jayden was diagnosed with a rare disease at birth and would have a multitude of obstacles to overcome as he grew up. However, Jayden’s story is one of bravery and immense courage, the type of courage that inspires all.

Jayden, now 7 years old, came to UCP-OC 6 years ago after being diagnosed with cri du chat syndrome, pronounced cree-doo-shah, as a newborn. The diagnosis came when Jayden’s parents, Darlene and Leon, grew concerned of their new born baby’s irregular breathing and high-pitched cry. After many tests and seeking additional opinions, a genetics test revealed that Jayden did have cri du chat syndrome.

Cri du chat is a rare genetic disorder that is caused due to a missing part of chromosome 5. The French term refers to the cat-like cry of affected children. Though symptoms of cri du chat vary case by case, doctors explained to Darlene and Leon what they should expect. Receiving news like this as a parent can be very discouraging, but Darlene and Leon fought to provide a better future for Jayden and that fight brought them to UCP-OC.

When Jayden was first referred to UCP-OC for occupational therapy 6 years ago, he was not able to hold his head up or move around on his own. After receiving intensive therapy at UCP-OC, Jayden is now able to walk with the help of his walker. This is an amazing accomplishment, and it is not the only improvement Jayden has made. Just three years ago, Jayden had his gastrostomy tube, which is a feeding tube, removed and began physical therapy at UCP-OC. After a lot of hard work, Jayden is now able to eat on his own.

Jayden had many obstacles to overcome before he came to UCP-OC, and at only 7 years old he has accomplished so much. We have no doubt that Jayden will continue to reach milestones and achieve his goals, and this makes his family and UCP-OC extremely proud!

 

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